TXPOTS

Thank you so much for all your comments. I have tried a cooling vest (and like my collection of compression hose and abdominal binders), it has not offered the relief I hoped. Simmy, I have thought about the reclining wheelchair, so I can actually get away from the house. I'm not ready yet, but I may head in that direction. It kills me that I can jog, but I can't sit or stand. I haven't come to terms with this yet. I wasn't prepared for how far back the hot weather has set me. Can someone tell me if Portland, OR has a similar climate to Northern California?

I am in Austin. I have often thought the same thing. My support system is here too and my kids are young so I don't want to take them away from their grandparents either. The heat kills me. Does taking hot baths or showers affect you as well?

Hook Em Horns! I went to UT undergraduate and pharmacy school there. Best 6 years of my life.

I can not take hot showers, but I do ok in the bath because I can lean my head back. I am jogging in the mornings, but now that the weather has changed I am feeling ill from my jogs, drenched in sweat, and getting adrenaline surges. I get depressed when I remember it won't be cool again until November here. I hate to make my kids move when they are so happy here, and the stress of the move would probably do me in anyway.

I have been battling POTS now for almost 2 years. After being properly diagnosed this December, I have slowly regained some function from an exercise regimen and meds. I am still extremely debilitated, but I have been about to carry out a pretty vigorous exercise regimen (outdoor jogging and my recumbent bike). I was starting to see improvement, but the hot weather here in Houston seems to be setting me back. I feel like I am losing all the progress I made. I am not tolerating the heat and humidity. I imagine the option is to stay in my house all day. I am pretty much home bound, but I have been enjoying outside time around the house. My support system is here, so I don't want to move. It is tempting though because I seem to tolerate the cool weather much better. Has anyone actually moved to a cooler climate? Just curious.

I think elevated Ang/AngII is an expected state if anyone is hypovolemic... however, it is supposed to trigger corrective actions which would then make it a temporary state (as in normal body regulation signals). So having high AngII seems expected for a population with low blood volume (and maybe even for a body condition simply mimicking that state?). It is the unexpected (paradoxical) lack of renin & aldosterone elevation that stands out as unusual in many.

I think the chronically elevated AngII is suspected of having especially untoward impacts on circulatory regulation (although it is by no means the only thing interacting in that realm)... so AngII comes heavily into the "Flow" subgroup theories.

It is also a paradox that renin is low in a state of high angiotensin II in this subgroup of patients. One of the several theories is that angiotensin II catabolism is impaired. I believe Dr. Stewart is starting a study to test losartan (an ARB) in patients with high angiotensin II.

A few other interesting findings from Dr. Stewart's studies. I am sure they may evolve and change, but since we are on the topic.

Although 75-80% of POTS patients are female, low flow POTS patients were exclusively female. They tend to have reduced BMI. This may be to due to the low blood volume found in low flow POTS or from other hypothesized mechanisms. This may be the group of "skinny females" who get POTS?

Low flow POTS patients have total body hypovolemia, whereas normal and high flow patients actually have normal overall blood volume. Of course, thoracic blood volume is low in all subtypes when standing as blood pools in the legs and abdomen, but low flow patients have low blood volume to begin with.

Over half of low flow POTS patients have elevated angiotensin II. Many, but not all, have low renin and low aldosterone. High flow POTS patients have normal renin and aldosterone. Some normal flow patients have low renin and aldosterone.

Dr. Suleman is my doctor, and he never mentioned this. Of course, I am usually in a POTS brain fog while in his office, and my husband does most the talking. Get this. I can run 5 miles and even 8 miles on a good day. I am with you Mack's Mom. The problems start when I stop running. I find it bizarre that I can run and run and run, but I can't sit up in a chair. Grrr... I would gladly trade the running for sitting and standing.

I envy you both! My best time at a mile is 15 minutes and that was when I was in peak condition, and it still hurt! I think my HR just goes too high. I have never been able to achieve any level of cardiac conditioning, even with daily training. But strength training was SOOOO easy for me! Even Pilates is easy if I have enough down time between sessions, it is just the aftermath that hurts.....for days!

I bet you could beat me sitting up though and for some odd reason, I do not respond well to actual strength training or pilates. Funny how we're the same, but different, I hate POTS.

I had seen Dr. Suleman once, and I think I know which test he did that represents the 'cardiopulmonary' test. I remember I had the regular pulmonary function tests, but then I had to get on a stationary bike and ride for a certain amount of minutes while I was breathing in a tube(or something) and have my heart monitored. I strained to make it through the x amount of minutes, as I knew already that i was deconditioned due to POTS.

Yes, yes... now I remember. The nurses set me up for the bike test with the breathing apparatus, but I passed out before we even started the test. This was in December, and it reminds me that even though I am still very ill, I have come a long way,

Dr. Suleman is my doctor, and he never mentioned this. Of course, I am usually in a POTS brain fog while in his office, and my husband does most the talking. Get this. I can run 5 miles and even 8 miles on a good day. I am with you Mack's Mom. The problems start when I stop running. I find it bizarre that I can run and run and run, but I can't sit up in a chair. Grrr... I would gladly trade the running for sitting and standing.

The Florinef, DDAVP, and intense exercise regimen have stabilized my heart rate. My blood pressure can also be completely normal, but I still feel awful. I have not found a strong correlation with blood pressure and heart rate and how I feel. I believe there was a Vandy study that showed heart rate did not correlate well with symptoms. Frustrating for sure.

I have been 'fishing' around the internet trying to find any connections with orthostatic issues and anything else. I have been reading since yesterday about cervical neck issues and orthostatic issues. I am not going to say that all orthostatic people are a result of cervical neck issues, but want to see how many of us might have a connection.

I don't have real obvious neck issues except that at some point 4 years ago when my POTS started, I had been having some really loud popping issues in my neck on occasion. It sounded really bad, and I would immediately take note of how my body felt below my neck, to make sure something serious didn't happen. Since then, I have odd creaking in my neck when turning sometimes. I also have gotten where I can't bend it back to look up.

I have also been reading about Chiari malformation, and not that I now think I have it, but do realize how any abnormality where the brain and cervical spine meet can cause problems. New research in MS is showing an abnormality of the blood flow out of the brain at the cervical region. Some of the symptoms in these diseases overlap with some of the symptoms of POTS.

I had a 'near' whiplash 15 years ago. I was in a mild car accident 10 years ago, with no injuries.

I am asssuming that alot of you EDSers could very well have cervical instability anyway, so I guess I am just assuming that you could have your issues due to this possibility. I also want to see how many of us non-EDSers have a history of any neck issues.

Thanks for the feedback!

My POTS symptoms started abruptly the day a swim coach instructed me to change my neck position while swimming freestyle. MRIs of the brain and spine did not reveal any abnormalities. The connection could certainly be a coincidence, but I do wonder if this somehow triggered my POTS.

Thank you all for your responses. I think it is certainly worth a try.

Is there a way to tell if you have high flow or low flow POTS based on symptoms or test results? I am trying to understand this condition better.

Thanks!!!

Dr. Julian Stewart has published many articles on this subject. He measures blood flow in the calves, abdomen, pelvic, and thoracic areas to classify patients. It will be interesting to see if his research helps direct treatment choices.

I don't understand the part about the legs being flat if your upper torso is elevated. I sleep on 25 in by 25 in pillows (Martha Stewart at Macy's) under my regular pillows which brings angle of incline to between 25 and 30 degrees from rib cage up. It's helped GERD and may have helped other symptoms but I was trying a lot so can;t be sure. I would be hesitate to do anything that hurt my sleep and a full body incline made me have those jerk awake attacks in the past - it may not have been a good trial and I may just be leery of anything interfering with my sleep. Having an adjustable air bed may be the reason I can't see how the feet stay flat - I don't know.

I'll be interested in if it helps you and how it affects the nonPotsy spouse.

This is heresay, but one of Dr. Levine's patients told me he said isn't very helpful to just raise your torso. He is the electrophysiologist who studied orthostatic intolerance for NASA and is about to publish the exercise study protocol in POTS. To get the full benefit, I am just guessing you would want your entire body at an angle, unless the majority of your pooling is just in your abdomen. I am sure many of us aren't able to tolerate the full tilt though. I bought a bed wedge because I thought this would provide some benefit. I know what you mean about not interfering with sleep. If I do not get a full night's rest, I am a useless POTSy blob the next day.

Hi, I posted about this subject a few weeks ago,

I have seen some improvements since raising the head of my bed by 6 inches ,

I believe it takes some time to work and read someones elses post who claimed it cured her orthostatic hypotention , so its worth a try !

Thanks Mirry,

I'll go back and run a search for your responses. I don't know why I didn't think of that first. Can I blame it on brain fog?

OK... now, I'm really losing my marbles. I even responded to your post!!!! I was thinking about doing the same at the time.

Anyone else have good results?

My husband bought me bed raisers (8 inches) to raise the head of the bed. I doubt simply sleeping on a bed wedge would do much because one's legs are still flat. Has anyone here actually tried to sleep with the whole bed elevated? Any improvement in symptoms? It makes sense that this would improve orthostatic tolerance since the Trendelenberg position (feet higher than head) induces orthostatic intolerance in healthy folks. Of course, I am still skeptical since a regular, vigorous exercise program has not alleviated my POTS to the point that I can lead a half way normal life. In fact, I acquired POTS as an extremely, active exercise maniac. However, I am willing to try anything as long as I do not worsen my POTS symptoms. Thoughts on this topic?

Same question here about low flow POTS and vasoconstriction. These studies are not breaking patients up into subgroups. I would guess Ritalin is best for patients that are vasodilated and may make patients with vasoconstriction worse.

I began having debilitating symptoms starting May 2008, but I plugged along until collapsing October 2008. I was admitted to the hospital where I was given copious IV fluids. I went into a remission after my hospital visit with only mild symptoms until March 2009 when symptoms returned after a day in the heat and a stressful event. I still did not know that I had POTS. I was very ill until the middle on June 2009 when I literally woke up one morning feeling wonderful and almost euphoric. This lasted for 2 weeks and then my symptoms came back with a vengeance, and I have been battling POTS since. I was not diagnosed until December 2009. This is a very bizarre illness, and I've had 2 remissions of sorts over the past 2 years: one gradual and mild and one sudden and complete, but very brief.

TX - Quote: "I would like to see standing catecholamines, aldosterone, and renin added as standard labs."

I happen to be going to my GP tomorrow for an unrelated matter. Are these blood tests something he can easily do, or do I need to go to a lab for that?

Thanks

He/she may be able to perform the blood draws in his office if they send them to an outside lab and follow proper storage recommendations. For the aldosterone and renin, I believe you may have to follow a degree of sodium restriction the day before, but check with your doctor. My endocrinologist actually performed these while I was in the hospital along with a formal water deprivation test since I had extreme polyuria. I am getting the standing catecholamines tomorrow and will have to be advised how long to stand prior to the blood draw. Your GP may want to send you to a lab more comfortable running these tests or an endocrinologist, depending on how familiar he/ she is with POTS. Some of the signs that my aldosterone was extremely low were weight loss, salt cravings, hollow and pale face, thirst, and polyuria. Aldosterone is often low in POTS patients, but certainly not all POTS patients, especially not high flow POTS patients. The results may help direct treatment. If you are on Florinef, a beta blocker, or clonidine, your results may be artificially low. These labs are best done pre-medication therapy.

In Low flow POTS there is low blood flow to the extremities - less blood going to the hands, arms, feet and legs. This is caused by increased peripheral resistance or vasoconstriction of the arms and legs. This also means the leg-based skeletal muscle pump is less effective because there is less blood flow there.

But the main issues in Low Flow POTS are excessive vasoconstriction everywhere - so if the arteries are always vasoconstricted then there is less blood available to vein reservoirs that feed the heart its blood. THis results in reduced stroke volume.

Reduced stroke volume and thoratic hypovolumia result (less blood feed to the heart) and reduced blood flow to the brain is the end result.

The tachycardia in low flow POTS is adrenergically mediated - its not just a reflex mechanism to increase blood flow to the brain, its also caused by oversensisation of the heart to norepinephrine and epinephrine.

Im in a hurry so I can go into much detail . if this doesnt make sense (quite possible) ill try better later in the week.

Great explanation. It seems the pharmacologic options for high flow versus low flow are polar opposites. No wonder so many patients with POTS have bad drug reactions. I, myself, have low flow POTS, and we are exploring additional drug treatment. Obviously, Midodrine was a complete disaster. I am actually curious about labetalol since it is a dual beta and alpha antagonist. I notice Dr. Grubb included it on one of his treatment algorithms.

When reading this forum, people are always talking about all these tests that I've never heard of/had done. Just glancing at some of the posts on the first page mentions testing things like Chromogranin A, adrenal hormone output, C-reactive protein.....all things I've never had tested. At first I just assumed a lot of the tests were people taking shots in the dark, something I couldn't afford to do but was glad others were doing, but now I'm wondering if I'm missing out on something important that my doctors should know to check but don't. I've had the tilt table test a couple of times, an EKG about 20 times, regular thyroid tests, and recently I did have a Vitamin D test (which I'm grateful the doctor suggested because I was VERY deficient), but that's it. Before I figured out I had POTS I had several other tests, but don't really remember what they were. Now that I have a diagnosis of sorts, doctors never want to test anything, they always have the 'try this med and see let's see how you're doing in a month' approach, and no one seems interested in what is causing my POTS. Should they be? Worse, now that I'm back in GA I've had to get all new doctors. I'm seeing a 'specialist' in Alabama that seems to have a set routine down--I don't think he varies any from patient to patient, and all my other docs are pretty ignorant of dysautonomia in general, just doing stuff whenever I ask them (I hate them all, but you don't get to be picky when you live in the middle of nowhere).

What tests should all POTS/dysautonomia patients have? Both for POTS specifically and for the complications that tend to come with it. I don't want to miss anything that could better clue me in to what's wrong. I have a bunch of symptoms, but no clue whatsoever causes them.

((I'm having MAJOR brain fog right now and my own post seems like babbling nonsense. Feel free to tell me if I'm right.))

You bring up an excellent point. In my opinion, POTS is not really a true diagnosis. It's like saying a patient has a fever. There are many different causes of POTS, and the top researchers in this field have not pinpointed all the mechanisms. I think physicians try to rule out obvious secondary causes such as anemia and thyroid issues. Drugs that have completely different mechanisms are tested on patients until a combination seems to stick. As a pharmacist, I can look at the various medications people are on, and this alone, tells me the causes of POTS are very diverse. Some patients obviously have major problems with over dilated veins, while others are vasoconstricted. Some patients are hypovolemic, while other patients have normal blood volume. I would like to see standing catecholamines, aldosterone, and renin added as standard labs. I do like that Dr. Stewart breaks patients up based on where they are pooling and peripheral resistance when supine.

Does anyone have strong urges to urinate but there's not much urine? Are there any meds or other approaches that help? Or any medications that you've noticed can prompt this? My son is going through a spell of this and we're trying to figure out if it's due to recent med changes (over the last month, increased florinef, increased mestinon, added some prednisone--although not all at once) Thanks for any tips!

I have this too. It seems to come and go. i narrowed it down to being the DDAVP and gradually lowered my dose and symptoms resolved. I then started to increase the DDAVP again due to my POTS getting worse and worsening polyuria. Oddly, the bladder pressure and urge did not return as expected. Of note, I stopped drinking Gatorade around the time my symptoms improved. I am baffled. The bladder pressure is either bladder dysfunction that is POTS related (possibly due to alpha receptor sensitivity), DDAVP, or less likely something in the Gatorade. It stinks. I know how he feels. My urologist blamed the salt, but I ruled this out.

It is a dietary supplement, so the amount per dose is not regulated. Studies evaluating equivalent dosing to Florinef are not available to my knowledge. I would want a doctor following my potassium levels if I were taking this daily. Off hand, I can't recall any effects on the thyroid, but I'm not 100%.

Dr Levine believes (probably incorrectly) that all forms of POTS respond to graded exercise. Certainly some forms will, but others wont. Infact I believe some of these exercise programs are based on the idea that all forms of OI are 'deconditioning' despite the fact that sportspeople have contracted POTS.

There are two forms of low flow POTS - one where MSNA firing is over active due to angiotensin II mediated neuronal nitric oxide deficits and the second possibly caused by NET deficiency (increased vasoconstriction but overall reduced central outflow). Decreased neuronal nitric oxide seems to increases sympathetic activity at every level and potentiate the effects of norepinephrine.

Losarten has not been tested in a double blind study for treatment of POTS. it was only found to improce the cutaneous (skin) blood flow deficits in Low Flow POTS - which may or may not translate to an overall improvement in symptoms. Theoretically anything in this form of POTS that increases the bioavailability of nitric oxide would be beneficial.

Exercise intolerance in POTS is also associated with reduced neuronal nitric oxide.

I stopped reading most of the blogs - they often to just report doctor's opinion or theory as fact.

I got my first significant POTS symptoms 2 hours after an intensive swimming work-out. At the time I became symptomatic, I was swimming 75 laps of a 25 meter pool in 45 minutes, weight training, jogging 5 miles most days, so I was not deconditioned. Perhaps, I got dehydrated, but I had been this active since childhood. I have spoken to many POTS patients who were in similar physical condition when first getting POTS. I agree with you, Rama. I will say that laying in bed makes my symptoms far worse and exercise has helped, but it is no where near a cure nor are the Florinef, salt, and DDAVP that help me keep hydrated. I now jog 5 miles/ day again, but honestly, I could probably exercise until the cows came home, and I would still have POTS.

I had my angiotensin II level drawn yesterday. I just want to see if I fall into the high angiotensin II category. Exercise is supposed to boost nitric oxide levels, as well as l-arginine and citruline, but I am skeptical of supplements. I haven't read the study, but I think there is also an article addressing low dose aspirin and low flow POTS. In the future, it may become critical to diagnose exactly what subtype or mechanism is causing POTS. Maybe that is why so many POTS patients have horrid drug reactions. We need to more specifically target therapy.

Hi. Having a problem with b/p. What else is new? Since I can't take bb's due to spasms and heart pauses, I was put on 1.25 mg of Altace since my b/p last week wouldn't come down from the high 170's/80 for a few weeks. Prior to then, I couldn't get my pressure to go up! I tried the Altace for 5 days, made me extremely nauseated and very hypotensive while standing, not to mention the feeling that I was going to pass out. The only good thing about the drug is that it's cardioprotective. I'm still on the wretched Coumadin for the clot in my leg. The dr. decided to switch me to Atacand 4mg which is in the catagory called ARBs. Altace is in the ACE family.

Mighty Mouse I know you take Cozaar which is in the same family as the Atacand.

I'm concerned about the side effects of the Atacand. Of course, reading everything online, two of the side effects are cardiac arrest and MI. I feel given my family's history and my wonderful history that I'm putting myself at risk.

I guess what I'm asking is a two fold question. Are these drugs good or bad for autonomic dysfunction and should I be concerned about the literature on the Atacand? And has anyone had good/bad experiences on either of these drugs?

Thanks for letting me vent my fears. Also, do you know if these drugs can increase heart rate? How I wish I could take a beta blocker. Very frustrating.

Rene

I have read a few studies by Dr. Stewart in which the ARB, Cozaar (losartan) was used to improve symptoms in patients with low flow POTS with high angiotensin II. Have you been told what kind of POTS you may had? I'm just curious because I went in today to have my angiotensin II level drawn. I have low flow, hypovolemic POTS.

I just got off the phone with Dr. Levine's associate and have started the process to see if I qualify for this program. It goes through my doctor here in Florida so I won't have to travel to Texas. It will be interesting to see what comes of this, I'm hoping maybe this will help me.

Maggie

Good luck. Keep us posted on how it goes.